Wednesday, December 26, 2012

Wherein no boxing or cleaning took place at all. We spent the day sledding on slush, playing with new toys / games and generally enjoying be together with no place to have to go. We went to bull run to see the light show and hit the cracker barrel on the way home. There was something there for each of the boys to enjoy as we waited for our food.

Porter

Will

And Andrew.

Sometimes I am struck with alarm at hold old Andrew seems to be and how quickly he has moved on from being a very little boy, but tonight as he exclaimed over the lights display and played with toys in the general store and listened intently to The Secret Garden recording that he really is quite young and sweet and innocent. Will just impresses me with his recall of the lyrics to any Christmas song (he knew the 12 Days of Christmas for goodness sakes), and Porter with how affectionate and loving he is, and the degree to which he still insists on being naked at home.

Tuesday, December 04, 2012

The boys bought their Halloween costumes during a Costco trip in August on the eve of our departure for the beach. I have finally learned that I really do need to do things months and months in advance because I always run out of time in the end. I also was a pushover for buying these costumes because I was so happy that they still are young enough to want to be superheroes. I don't push costume themes with the boys, but I liked that they all wanted to be the same sort of thing.

About to head out!

"The Mom Stays in the Picture"

Porter had incredible stamina that night. He and I did return home a bit earlier than the boys but he held strong for a good hour. This was the first year Andrew and Will stayed out that long, too. It was really fun.

Pit stop of the Murrays' for drinks. We nearly didn't make it out of there.

The spoils.

Porter was really digging the candy.

At the ward Halloween party, during which Will discovered the joy of winning treats in the cake walk. We accumulated an enormous quantity of baked goods; he was so proud. He barely partook of any, though.

For breakfast we had spooky Krispy Kreme Donuts. Will didn't finish his spider web creme filled, but he did like what he ate.

We bought him training wheels and put them on Andrew's old bike. We had failed to do this some time ago because we would not let go of the hope that he would learn on a balance bike first and never need trainers. But he is his own guy and he loved his first bike ride, taken the following Saturday at the Dolley Madison Library park and trails.

Will wanted to decorate cupcakes for his birthday instead of traditional cake and I think I am not going back. All the cute ones were designed by our extremely talented nanny, Cassidy. The boys loved them all.

Will learned to play and love UNO during our time at Kennedy.

Bike gear.

More bike gear.

Porter was still heavily in his naked, pants-free, shirtless phase in October. He wears more clothes more of the time now.

Ruining some cupcakes for the rest of us.

We can't believe our little Will is 5.

The power ended up going out during the end of that party and did not come back on again until Halloween evening, just in time for trick or treating. Will feels that the power outage contributed to the adults-only vibe of his family party (lack of Segura cousins, unlike Andrew's at Chucky Cheese), and I am not disposed to correct his misperception. But next year I have a feeling we will be able to put on the kind of party he has in mind.

Everything always seems to happen with Will in October. In October of 2010, he had g tube surgery, and at the end of the month did a week at a feeding program at UVA. This October he started his 8 week treatment at Kennedy Krieger. We completed those 8 weeks today.

It was such a milestone in our lives, to finally undergo this program. And it was such a strange time, too. For the first time as a mom, I was away from two of my kids basically all day long. Some days I only saw Porter for 30 minutes. We had a live-in nanny, which made it all possible. It was a program that I had not wanted to resort to, and which I was dreading beginning. But in the end, as strange as it was to be gone all day with just one child, the strangest part was that we got completely used to it, and there are many things about it I know I will miss. It was really nice to spend so much time with just Will. I doubt I will ever get that sort of one on one with any of my kids again. I treasured that.

He is going home with heavier protocols then they anticipated at the beginning of his admission. We are not able to put a full plate of food in front of him, as they thought. But we will get there, and as we do, we have protocols that get him to eat enough each day that he is no longer reliant on his g-tube. He wouldn't have it removed for at least 6 months, since it requires a surgery to re-install if that became necessary, but a dormant tube has been the prayer of my heart for years now.

It was strange to go home today after so many weeks of such an intense program. It is sort of like stepping off an airplane into a new place, and it is all the stranger to me that I will probably be over it again in the next two days. Adjusted again already, like it was just a dream.

I want to record a bit about Will as he is right now. He has always been a really very sweet boy. Always quieter, more subdued and milder than his older brother or other boys. But he seems to have outgrown that lately, and those traits all but disappeared during his admission. It was kind of irritating, actually. I felt sad the other day when I saw another boy his age get a huge smile and run to his feeder when she appeared at the playroom to take him to his meal. Why was Will suddenly acting so old and too cool? He would have been sweet like that last year, 6 months ago. Apparently it is also common for kids in these programs to begin acting out in other ways as their control in the meals disappears. He began to seek out attention by acting out a bit. He would throw pieces of food at me during feeding times, call me "sucka!" or wiggle around excessively in his seat. I most hated his heavy usage of "Duh!" and the eye rolling. These behaviors persisted outside the program, too, and he found ways to shame us during Primary or with extended family. Because he was doing these things for attention, I am supposed to ignore them so as not to reinforce, but it drove me crazy. Will's "feeders" (behavioral psychologists) were really amazing, and a huge support to me in handling both is eating and his annoying behaviors. I will always love them and owe much to them.

I am treasuring signs of his old, softer side. He was so thrilled when the team presented him with his new backpack. He even loved that it features a little monkey chewing food, opening his mouth to show that he's swallowed, and then getting praise, just like his protocols. I was thrilled that the teenager possessing him has not totally swallowed up his guilelessness. He got a t-shirt, too, which he declared he couldnt wait to wear every day. Just like a little boy I know he is. He participated in a swallowing study today, for which we received a $20 gift card. He told Andrew about it and said sweetly that "at least [he] got some bucks!"

He fell asleep on the drive home (we left after lunch) and my speeding plus lack of traffic meant that we were in time to pick up Andrew from school. Will insisted that he had not been sleeping, but admitted that he "could barely keep [his} eyes open." Then he remarked, while crossing the school parking lot, that he could barely recognize the school, it had been so long since he'd last been. He held my hand. Andrew doesn't really do that anymore. Andrew was happy to see us. The boys played on the playground together before we left, wrestling and playing soccer. It was really the first time Will had been outside during the day in months. He looked so happy. When we got home, the boys played soldier in the basement. They didn't argue once. It was wonderful, really. I feel so much hope and joy right now.